An isolated and distrusted burden

Those of us who are sick don't have it easy, and by that I don't mean those who suffer from a two-week flu but from long-term chronic illness and/or disability. Long-term sick and disabled people are generally considered to be a burden on society if they are unable to work and "contribute to societal costs".

From a chronically ill point of view, there are several things to fight against, first of all you have to endure your illness symptoms, then there is the worry about the finances, should the insurance fund approve sickness compensation? 

On top of this, we have a constant guilty conscience, for relatives who may have to help in different ways or because you can't bear to spend time with family and friends. You also have to put up with other things that take a toll on the mental, for example unsuitable environments and facilities i.e. not handicapped accessible, but the hardest is probably distrust from the environment and widespread ableism.

I'm among the the lucky ones, I can still work and "contribute to societal costs", but there are still things that are mentally demanding and that take away from the energy you mainly need to manage and parry your physical well-being.

Isolation

In normal cases, I commute weekly to my place of work, approximately 7 miles from home. It's an agreement between me and the employer because my health problems. It has worked well and gives me a social context (basically the only one) together with my colleagues every other week. But lately I've been working from home more permanently while waiting for a possible knee operation. I have difficulties walking and also severe pain, so now the isolation is almost total.

Suspicion

An uncomprehending and sometimes suspicious environment is really hard to experience. Is she really in such bad physical shape? It doesn't look that way...and why does she joke and laugh so much if she's so sick and in pain?

I may have to take this on myself as it probably depends a lot on the well-hidden pain and my reluctance to speak widely about it, unless someone asks, of course.

Jealousy

Another aspect that affects is the quiet but clear attitude of those around me to my special "privileges" and can certainly be linked to the previous sub-heading. Why should she have special conditions when she doesn't seem particularly sick?

I don't know if there are more people who have the same feeling when it has to do with the attitude of those around them, but it's a factor that weighs on you and is constantly present in social contexts, whether you acknowledge it or not. This means that you often shy away from participating socially even if you want to but you're also well aware that you really need to take the chance when you can to break your isolation a little.

I also don't know if I'm making myself clear of what I want  to say with this, but isolation is a danger in the long-run and it's easy to end up in that position as a chronically ill person or a disabled.

Keep in mind that all this are just my own experiences and perception.

So my advice is to try to ignore all the negative perceptions you get from people, some of them could sometimes just come from your own imagination. And for goodness sake, keep your personality, whether you're an exuberant and positive person, a grumpy bitch or someone who suffers in silence, that's all  okay.

XOXO